What I found in my bathtub!

 This!

This is what I found in my bathtub this week.

I have not seen one of these in there for a very long time.

She has a birthmark in her belly button.

It makes it look like someone forgot to wash in there.

 And then I found her sleeping on the couch.

 We have all been fighting over her.

 And taking turns holding her.

 We have her for two more sleeps.

About 54 more hours.

 The house will seem empty and quiet when they go.

And we will miss them.

This is where Joel has spent the past week.  He has been fighting a fever since last Thursday.

He spent Tuesday in the hospital, having chemo and then getting more transfusions.  

The blood work showed that he is malnourished.  I threatened him and said that he either has to start eating or else he will have to start drinking Boost.  He was not happy but promised that he would start eating cause he hates the Boost……. I am still waiting for that to happen.  He has no appetite, doesn't want to drink, can't stomach any supplements and doesn't want to take any vitamins.

The doctors think that he is fighting a virus and that he should start feeling better soon.   He is still off all of his oral chemo but he is back on the steroids this week.

This morning Brianna took him into the hospital for more blood work.  She told him that she would not go in with him though cause then she would faint.

I am making him steak and bison sausage chilli for supper tonight.  Brianna made him cheesecake.  I have Boost in the pantry……….. just in case!

Still learning to going with the flow

Just hanging out with Joel at the hospital in Vernon.  His counts have been dropping and he was in dire need of a transfusion.  He had blood work done here on Friday, ANC was 2.2 (they want to keep it low for the next three years, between 1 and 2), Platelets were in the 90's, and hemoglobin was in the 70's (kind of low but they just wanted to see if it was moving up or down).  Joel was tired but seemed to be holding his own so they scheduled more blood work for this coming Thursday but said to go in earlier if he started feeling worse.

Joel started feeling even more tired than usual, he got dizzy when he stood up, the nausea and headaches had returned, and he said that it felt like his heart was racing.  So I took him in this morning to see if the counts were still dropping, and they were.  ANC was a 1.2, platelets in the 50's (he is getting nosebleeds and when he gets a needle it doesn't want to stop bleeding but I don't think they transfuse them until they drop below 30), and the hemoglobin was in the low 50's (kind of scary low).  That is why his heart was pumping so fast, working extra hard to supply oxygen to his body.  His hands started to look very transparent and his face had little color...... he has had one bag of blood so far and he is starting to look a bit better.

I usually know when his hemoglobin is dropping cause he gets very grumpy and irritable but this time that didn't happen.  He just stayed his normal happy and go with the flow kind of self. 
I talked to his nurse in Vancouver this morning.  She said that Joel's counts are quite unusual.  We have been told to stop all the oral chemo until next week when he comes in for the Vincristine, they will check his blood counts again and take it from there.   Karen said that while Joel's reactions right now are strange, it is not unheard of for some kids to have a rocky start at the beginning of Maintenance.

When Joel finished his intensive treatment and when maintenance started, the doctors and nurses and staff at Ronald MacDonald house told us to go out and celebrate, to have a big party. Joel was feeling so wretched and miserable, the last thing he wanted to do was go out and celebrate.  The recovery from the treatment he got in November and December just seems to be taking so long this time.  His weight is still low, he hasn't put any that he lost in December back on yet. I am trying to bribe him with pie, cookies, baking and yummy meals but his appetite just hasn't come back yet.  His legs still bother him and his foot seems to be doing funny things.  His hands shake when he eats or does anything.  His hair has not started growing back yet and his eyebrows and eyelashes have just started falling out.  When I give him a hug, I swear I can feel every bone in his body.  And now he has started coughing.

I guess, somewhere in the back of my subconscious, I thought that life would be normal and easy during Maintenance.  I thought that life would go back to being normal.  I have been told that life will never be normal again, that we would have to find a new kind of normal but I don't think I have come to terms with that.
Grant has gone back to work now and is getting back into his old routine.  Adam and Ari are settling back into school.  They are busy studying latin and algebra, writing essays, reading history, building rockets and trying to blow things up.  It is mostly good.  I think Adam has some anxiety issues still that we will have to keep dealing with.
But I can't sleep, when I do sleep, I dream of hospitals and cancer.  I have even resorted to taking some of Joel's pills to help me sleep.  I have tried to sit here and write so  many times but it just feels too depressing.  My mind races and I can't seem to shut it off.  My feet just can't seem to find any solid ground yet.

Last year I didn't make any New Years resolutions, my focus was to get thru the year.  I clearly remember the first time I met one of the families that we got to know over this past year.  I was in the family kitchen at Children's Hospital making Joel something to eat, another kids dad came in to fix a meal too.  We started chatting and he said that they had been going thru treatment for a year already.  My first reaction was "I am not doing this for a year!"  And here I am, a year later still plugging along.
I did make a New Years Resolution this year, it was to start doing creative things again.  I used to draw and paint, knit and play music.  I am looking for a small apartment sized piano for the living room and then the plan is to learn to play again.  Is playing piano like riding a bike?  Does it come back easily?

I have started knitting a sweater for Sienna, it is looking very nice.  I have been doing lots of reading too, it helps me escape.  Mom gave me a novel, "The Russlander" and then I read the "The Steppes are the color of Sepia" again.  I like reading about my familys history, just wish I had a book about my dads side of the family too.  Right now I am reading some of my old favorites by Leon Uris.
Joel is busy studying to get his Class 1 learners licence.  He has applied for an apprenticeship with Hydro.  His calculus course should be coming in the mail in the next week or two.  Life is moving along. Brianna and Sienna are coming for a week long visit starting this Saturday, I am so excited. She has promised to make us all a cherry cheesecake. I think I will whip up a double batch of fruit perogies with cream sauce, that should put a few pounds back onto Joel.
I think that spending the day in the hospital with Joel will be good for me.  Maybe it is just stress that is lacking in my life and this will make things feel normal and I will be able to sleep well tonight.  We should be out of here around 8:00 tonight.

This Morning

This morning Joel went to have blood work done.  His ANC had come up to a whopping .87.  So he and Grant and Adam and Ari all headed down to Vancouver.  The roads were good, clear the whole way. They are just settling in to Ronald MacDonald House tonight.  Tomorrow Joel will go for treatment.  I think he wants to go to Long and McQuaid and the boys would like to hit Science World.  Hopefully all goes well and they will be back sometime this weekend.
December 30, 2011 will be the starting day of Maintenance.

ANC

So Joel's blood work was all good except for his ANC.  It was at .7 and it needs to be at .75.  So….. we will try again tomorrow morning.

The best Christmas ever

Joel started eating again about a week and a half ago.

He is still not eating much but at least he is trying.

He is still fighting the nausea and the headaches.

He has been really tired and has been sleeping lots.

He did get out so see some friends.

And he went to some music practices.

He played his guitar and did a Scripture reading at Church on Christmas Eve.

This morning he went for more blood work.

Hopefully we will find out before lunchtime if he heads down to Vancouver today.

If it is all a go, then Maintenance will start tomorrow, December 29th.

 Brianna, Shane and Sienna got to be Mary, Joseph and Baby Jesus at the Night in Bethlehem. 

 This past week we all did a little bit of this.

 And a little more of this.

 And a whole lot of this.  It was a great week.
I am so going to miss her when she moves to Alberta. 

 We were all so happy to be home for Christmas.

 The favorite gift this year was the table hockey.

It has been played constantly ever since it was opened. 

And I caught the prettiest smile on film. 

Maintenance

Girls get two years of maintenance but boys get it for 3 years because they have more places that the leukaemia cells like to hide.  So for the next three years Joel will go to Vancouver every three months for chemo in the spine - Methotrexate (He had been getting that once or twice a month).  Once a month he will go get Vincristine at the Vernon hospital (he had been getting it up to 4 times a month).  Five days a month he will be on low dose steroids (Prednisone).  Once a week he will take oral chemo (Methotrexate).  And everyday he will also take another oral chemo (Mercaptopurnine).   He will also continue taking antibiotics three days a week.
It still sounds like lots to me but compared to what he has been taking this will be much less.
So that will be the plan for the next three years.
His hair should start to grow back soon (not sure if he will ever cut it again).
He will be 21 when Maintenance is finished.
Then it will be one more year until he is considered cured.
I am looking forward to 2015!

So, here is to hoping that the last 13 months of intense chemo will have retrained his bone marrow to produce normal blood cells.  Praying that the next three years of maintenance will prevent a relapse.

Sienna and Joel

 Joel and I finally got to meet Sienna.  She is the cutest thing ever.

She looks just like her dad.

Since I got home, Brianna has come over everyday so that I can hold her and she can go have a nap.

Today Joel went for chemo in Vernon.  He has constant nausea and headaches and is now losing weight.  The doctor decided to hydrate him before sending him home and she wants blood work done again Friday cause his counts are dropping quickly and she thinks he may need more transfusions.  He just got home and he went straight to sleep on the couch.

Stories from Vancouver

If anyone is interested I thought I would share a few blogs from some of the families we have met in Vancouver.

http://noahstolte.blogspot.com

http://samsconqueringofall-goertzens.blogspot.com

This time in Vancouver one of the girls who has been staying at RM House finally got a heart.  She has been waiting almost a year.  Her story was just on CTV about a week ago.  So far the recovery is going very well.

Last Thursday Joel got a pile of chemo.  One of them was a spinal.  He was scheduled to have it done at 8:30 am.  Joel prefers having his spinals done with no pain medication cause he doesn't like the side effects.  There is a 6 year old girl at RM House who is from Salmon Arm and has the same diagnosis as Joel.  She is about one month behind Joel in treatment.  She was scheduled for the same spinal chemo but her appointment was at 8:00 am.  She loves the pain medication they give her.  She said "Mom, you have to try this stuff.  It makes everything feel better".  Then she asked the nurse if she could have some more and if she could have some to take home with her cause she could really use some when she got home.  When the nurse said "no", then she asked if she could have another spinal.  The nurse told her no again because it was Joel's turn next.  Then she asked if she could have another spinal after Joel was finished his.  Those must be some mighty fine drugs!

Last Friday when Joel and I were still in Vancouver finishing up a few last appointments, one of the doctors walked in on Joel throwing up.   It is always a good thing when they can see exactly how he is doing cause when anyone asks him how he is doing, he smiles and says "I'm good".  Anyway, the doctor got into a discussion with one of the nurses just wondering what they could do to make Joel feel better (hydration, transfusions, different meds).  Joel did not want to be hydrated or get transfused cause he just wanted to get home and he didn't want anymore medication cause he doesn't like the side effects. The nurse kept saying that she didn't know what to do for Joel cause she didn't know what was causing him to feel so bad (the chemo or the radiation or being dehydrated or low blood counts or…. or…. or).  And then the doctor said something I have NEVER heard a doctor say before.  He said "Lets be honest here, we did this to him".  Anyway, it made Joel laugh.  They decided to give him a couple of transfusions and it did help a bit.  He also agreed to me drugging him up for the drive home so that he could sleep the whole way so I know he was suffering a lot more than he let on.

He also got another CT scan done to check out what the clot in his brain is doing.  We talked to David on Monday to get the results.  David said it looks way better than he expected it to look at this point.  There is only a skiff where it was.  So that means that Joel only needs the enoxaparin until Friday and then NO MORE NEEDLES twice a day.  He is so excited.

Where Joel's At

 This is where Joel goes for chemo during the week.

Yesterday was his first day off since getting here over 2 weeks ago.

He has had chemo or radiation or both everyday in the past 2 weeks.

Radiation is finished now!

 I finally got a picture of Joel with his Oncologist.

 On weekends when Joel gets chemo, he has to go in the main entrance, be admitted, and then head up to 3B 

 It was extremely busy last weekend and he had to wait in the playroom for a long time.  At this point his counts were all getting very low.  He was very pale but his mood was dark.

He has been extremely tired, the nausea hit this week and he has been getting lots of headaches.

He was escaping into one of my favorite books, "Till We Have Faces" by C. S. Lewis.

 But the nurses here have a way of making him laugh and that seems to make all the difference.

 It made his day when the music store at Granville Island was finally open.

 On Monday we were given passes to go to the Christmas Light Up at the Capillano Suspension Bridge.

Joel was feeling very rough that day and didn't want to go.

But I gave him a cup of coffee and talked him into trying it out.

He had tonnes of fun.  He did lots of walking which is great for making his blood counts recover.

He got to try the glass blowing booth and made a Christmas ornament.

It was so cool.

 Here he is adding color to his glass.

 Melting the color in the furnace.

 Adding some white.

And then stretching out the glass.

 The bridge made me weak in the knees.

We also did the tree walk which was very cool and the cliff walk.

And we tried on lots of accessories that we could never afford in the gift shop.

 This week at Ronald Macdonald House we decorated for Christmas.

Joey's put on a very yummy family dinner.

Gramma J and Jerry came to visit.

Uncle Stephen and Aunty Lani came to visit.

Aunty Rachel came to visit.

 Santa came to visit.

Here he is asking Joel if he wants hair for Christmas.

Joel was not offended cause underneath Santa's hat, he was bald too.

Today Joel is feeling pretty rough so he is going to stay in bed as long a possible.

I will bring him up a cup of coffee soon, that seems to be the only thing that helps these days.

He goes for more bloodwork this afternoon.

His counts have all dropped and he may need some transfusions.

Tomorrow morning he gets three more doses of chemo.  Methotrexate in the spine, vincristine and Peg-Asparaginase in the port.

On Friday he has another CAT scan to see what the blood clot in his brain is doing.

And then, if all looks good, we will be heading home.

Maintenance is scheduled to start on December 27th, as long as his blood counts have recovered by then.